What the New CDC Numbers on HIV/AIDS Really Mean

Dec. 1 marks the 22nd anniversary of World AIDS Day. This year's theme -- universal access and human rights -- underscores the need for prevention and treatment for all people around the world. Yet in light of recent Centers for Disease Control and Prevention reports, most black Americans are focused on the increasingly frustrating situation here at home. In October the CDC reported that one in 22 (pdf) African Americans is at risk of getting HIV/AIDS. The odds for black women were a little better -- one in 30; for black men they were a little worse -- one in 16.

The statistics are not a surprise. They only confirm the continuation of the epidemic's 15-year proliferation among black men, women and children. The brief phrase -- "one in 22" -- seemed so simple that the Associated Press reported it with little explanation. Like most of the media, it missed what many HIV/AIDS activists and clinicians know: These numbers tell only part of the story of HIV/AIDS and African Americans. And rising above the stigma that is often attached to such global pronouncements of a community's health is a critical part of beating HIV/AIDS.

Getting Real: What's Our Risk?

Delivering a national assessment of HIV/AIDS risk is a complicated business, but the CDC's approach paints a picture so narrow that one can't help thinking of close friends and extended family as people in immediate danger of contracting the virus. And to some degree, that's by design. It is the job of the CDC, as our national disease-surveillance organization, to get our attention. The problem, though, is that statistics like one in 22 can be misleading and counterproductive.

It begins with the way the numbers are collected. "We calculate the lifetime risk of HIV infection, gathering data from 37 states and Puerto Rico [the only states with named HIV/AIDS reporting]," explains Irene Hall, Ph.D., chief of the CDC's HIV Incidence & Case Surveillance Branch in the Division of HIV/AIDS Prevention. Using a combination of mortality statistics and census records, Hall says, the CDC crunches the numbers to arrive at an estimate that supposedly applies to all African-American men and women, regardless of lifestyle, education or income level.

The CDC's own HIV/AIDS surveillance report (pdf) highlights the fact that among African Americans, the risk of getting the virus is "increased by poverty, lack of access to health care and higher rates of incarceration," but the lifetime-risk estimates are not adjusted to reflect the impact of such social conditions.

The problem, explains researcher Robin Stevens, M.P.H., Ph.D., is that "if you don't control for social or economic status, you won't get an accurate assessment of the role race plays in disease statistics."

Nicholas Jewell, Ph.D., a biostatistician and expert in HIV/AIDS at the University of California, Berkeley, says that it's difficult to report these types of statistics, and the way the numbers are reported can be confusing. "A risk of one in 22, for example, is approximately 4.5 percent," he says. "It tells us that 95 percent of African Americans are not at risk for HIV/AIDS in their lifetime," which is a very different message. Similarly, the one-in-30 statistic for black women tells us that 97 percent of black women are not at risk for HIV/AIDS in their lifetime. The number for black men is roughly 94 percent.

Once we look at the numbers this way, we still see a population with a risk that is unacceptably high (55 percent of new cases are diagnosed among blacks), but we are also looking at people who have taken some responsibility for their health and demonstrated partial success in the fight against HIV/AIDS.

That subtle change in perspective can have a powerful, positive impact on behavior, says Stevens, who is also a researcher at the University of Pennsylvania. "In my recent study, I found that when media reports highlight a population's risk of HIV/AIDS, levels of HIV/AIDS testing in that group actually go down," she says.

"For every additional 100 newspaper stories about HIV/AIDS in a given month, African Americans decrease their levels of testing by 1.8 percent in the subsequent month," Stevens adds. "This is significant because generally, blacks are more likely to get tested than other groups."

Stevens also reports that "for many black study participants, the media coverage was seen as a source of shame and embarrassment." Their response was to disconnect from the information.

For these reasons, many who work in black communities daily think that finding new ways to talk about our risk is an important part of preventing the disease.

Building on Our Strengths

"No matter how you look at it, one in 22 is too high a number," says Linda Scruggs, director of programs for the AIDS Alliance for Children, Youth & Families. "But it's not playing to our strengths. We need to ask, how are those 95 percent of African Americans remaining safe from the disease? What can we learn from them, and what can they share?"

It's definitely time to look at HIV/AIDS differently rather than turning away in frustration, advises Debbie Hagins, M.D., clinical director of the Chatham Care Center in Savannah, Ga. As principal investigator for one of the most successful HIV/AIDS studies targeting black women, Hagins fully understands the way people respond to reports of HIV/AIDS risk. "The stigma is just so great, but these statistics should not be used to demonize black men or women," she says. "HIV/AIDS affects all groups of people, but you can't conquer anything that you can't confront. We need to realize that we can control this disease. HIV is not in the food, it's not in the water, it's not in the air -- it's just a virus, and we can get on top of it."

While the CDC's statistics may seem culturally insensitive, its new national HIV/AIDS policy, along with the National HIV/AIDS Strategy (pdf) released by the White House in July, reveals a very different line of attack for HIV/AIDS among African Americans. The CDC's plan recognizes that "for low-income African American women who are underemployed or unemployed … providing training in income-generating activities coupled with components to increase self-efficacy, self-esteem and business skills may result in a decrease in risk behaviors for HIV/AIDS."

The National HIV/AIDS Strategy promises a focus on community-level factors that contribute to HIV/AIDS, such as homelessness, poverty, hunger and discrimination -- key issues for blacks in the fight against the disease. In other words, the agency and the White House have acknowledged that HIV/AIDS risk is rooted not in promiscuity but in other, hardscrabble social factors that weaken the resolve of many African Americans in the battle to protect themselves.

While many note that the national strategy will need a great deal more funding, "for the first time, the White House is bringing the right people to the table," Hagins says. But even given increased federal support, she believes that HIV/AIDS can be defeated at a far more personal level. "We've given HIV/AIDS too much power," she says. "We are letting HIV/AIDS be the pilot, and we are acting like passengers on this ride. In fact, each one of use can make significant strides by getting tested, resisting stigma and not giving in to fear."